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Jeri Hilderley’s Story of MdDS

This is a photo of myself, Jeri Hilderley, with my god-child, Lauren Bengis, New York City, December 2010.

My Mal de Débarquement Syndrome was set off by an eight-day sailing trip in 2006, during which I was part of the crew. The sailing trip was wonderful and I experienced no motion problems on the boat. However, it is six years later and I am still rocking, as if I never got off that boat!

It took four years of going to doctors and neurologists, and having brain and inner ear tests, and the full gamut of rotating chair and eye exams, to be diagnosed in 2010 with MdDS. People like us do not experience the room as spinning, but feel our own bodies to be rocking in ever-changing and mysterious ways. At last, a neurologist at Mount Sinai, Dept. of Neurology, Locomotion Lab and Movement Disorders labeled what I had as MdDS. Prior to that, John Hopkins specialists (in the Dizzy Department) had labeled my condition as a type of migraine-related vertigo, which didn’t sound quite right, but what did I know? They thought that I could control my condition, and that I would rock less by eliminating certain triggers such as caffeine, alcohol, nuts, avocados, beans, and a list of other things. Yes, we must all imbibe with moderation, but this route did not bring any marked results. At NY Eye and Ear Rehabilitation Clinic I’d undergone several periods of rehabilitation exercises, analysis of my movements, elimination (and fixing) of the possibility of crystals floating in my ears, etc. The exercises and modified Tai Chi workouts that I learned there have been essential in my keeping sane and strong, and being able to live my life as fully as possible, but they too, did not fasten on the identity as MdDS. Because Mount Sinai’s Department of Neurology and Locomotion Lab and Movement Disorders was doing intensive research in Motion Sickness and MdDS, they were prepared to give me a label to my condition. I had further ENG tests which showed damage to the nerves in one of my ears, which contributed to my type of imbalance, but was analyzed as being separate from and different from the MdDS type of imbalance.

I have found no medications that have helped me. What has helped me is the daily Tai Chi exercises specifically structured for older people with imbalance issues (I am 74) and swimming using weights for building muscles as often as possible at my health club. In the water, I do not feel the rocking sensations as the water is supporting my weight and balance. I am “normal” when I am exercising in the water. Keeping active, creative (I am a writer and musician-composer and a retired teacher), meditating, chanting, having friends and keeping close to nature all helps me.

I am lucky to have been retired with a small pension when I went on the fateful sailing trip! With the onslaught of the rocking, I am very uncomfortable in crowds moving about rapidly; train and bus stations, subway platforms, museum and theater crowds make me rockier! I move mindfully, slowly and avoid disturbing situations. I used to play tennis, but I had to stop all activities where a quick movement might mean a fall. I have to be conscious all the time of what my body is doing, as a dancer must. I broke a finger making my bed, because my rocking motion was not in sync with stuffing the quilt under a pillow and my finger hit the wall.

It is important to keep our spirits up and our bodies and minds active and creative. We need to keep laughing and use this condition to help us strengthen ourselves. When my body and mind are alert and strong, I am not afraid that I will get hurt because of the imbalance. Since this is a tiring condition, it is necessary to rest when we are tired.

Jeri Hilderley June 2012

Jeri Hilderley’s Story of MdDS was last modified: August 11th, 2017 by MdDS Foundation